Linda Oatley describes the fear of becoming very ill with MS
Linda Oatley, who has multiple sclerosis, agreed to film undercover at a treatment clinic in the Dominican Republic for Panorama's Stem Cells and Miracles. Ms Oatley - who had no intention of having the untested, unproven treatment - talks about her illness, the emotions at play and the experience of meeting a doctor who says he can fix her.
My symptoms began in 1998 with legs that felt hot when they should be cold and cold when they should have been hot. I didn't think much about it but at some point, quite a while later, I went to a chiropractor and on to a physiotherapist. I self-diagnosed myself as having a trapped nerve of some sort.
It was the physiotherapist who first mentioned that it might be neurological. From there it was to the GP for a referral to a neurologist and then a MRI before I was told that it was MS.
I honestly, really didn't think about it. By this time my symptoms had disappeared and when you feel well you feel well. I didn't do anything about it, lifestyle or diet wise at all, nothing changed for me.
I was a motorbike rider back then and I just did more motorbike riding to prove that I could.
I was in denial, but then I had no symptoms, so it was easy enough to do.
The turning point came a couple of years later, in 2001, when I tripped at work. I looked down to see what I had tripped over and there was nothing there. I knew then what was happening, I knew it had come back.
Over the next 12 or 13 weeks I got very bad, that was when I was at the bottom. I couldn't lift my arms, my legs went weak, I couldn't write, I could barely make the stairs. I also had some optical problems, my left eye had 'fluttery' muscle spasms and it was tender to the touch. It was horrendous how quickly I became so ill.
Coming to terms
But it was the mental side that was so much more traumatic and I thought I was going to die. I was not unaware of what MS was on an intellectual level, but I was scaring myself to death on one hand as I tried, on the other hand, to come to terms intellectually with what was happening.
This is why I can appreciate what people chasing stem cell cures are doing. At one point there, during those weeks and months, I would have done anything and gone anywhere for the cure. That's the key.
Back then - and it wasn't that long ago - there was less talk of stem cells, we were just waiting for the drugs that were being tested.
I was aware at the time of a DMD - disease modifying drug - that had just been licensed in the UK. I was already going into remission when I got my hands on the drug.
Linda travelled to the Medra clinic in the Dominican Republic
My condition plateaued, as it can do, with neither rhyme or reason and I started to get better. I went into remission, leaving me with a heavy limp on the right side and a weaker right side. I'm right-handed so my handwriting is horrible, particularly if I'm very tired. But from the outside I appear quite healthy, but I've got this residual damage. I've been stable for seven years.
As to how people can buy into some of the 'new therapies' being offered abroad, I would say that the brain is a very powerful instrument and it can make you believe in things.
Of the people I know through the neuro-physiotherapy clinic where I am a trustee, there is one young woman with MS who I know has spent £13,000 to travel to Europe for stem cell treatment. It was useless, there is no change at all, if anything she has probably gotten marginally worse. But she is in an electric wheelchair, she is a young woman and she can only even operate it some of the time. I don't think I could have been the one to say 'Don't do it'.
I also know a young man of 34 who has very jerky movements and his speech is quite blurry, he is wheelchair-bound and needs three physiotherapists to help him stand. Every week, he asks me, 'Linda, when are we getting these stem cells? Where are they?'
I know if he could afford it, he would travel abroad for treatment.
I tell him it could be five years or maybe 10, I really don't know. I say the same stuff to him every week, but he's young, he's got to wait, it will, hopefully be there for him in a legitimate way, some day very soon.
'It was hideous'
Where I went as part of the Panorama programme, the Medra clinic in the Dominican Republic, there were no children that I saw, only adults.
Dr William Rader was secretly filmed for Panorama by Linda
I knew that I wasn't in the Dominican Republic to have this stem cell treatment, that I would not be having anything injected into me.
I do imagine that if you didn't know anything about this guy - this Dr Rader - that you'd be reassured by him.
Here he was, seeking to reassure me as I said I was a very nervous patient. I said I needed a little more time to think about it and he was saying, 'Linda, you've got to have this injection.'
This was akin to foot-in-the-door double glazing salesman tactics, it was hideous. He was saying, basically, 'Let me, the clever doctor who knows better than you, decide what's best here.'
There is this intimidation factor around doctors and people like Rader play on that. Why would you not believe him? He's standing there and saying 'I've treated 1,000 or 1,500 patients, 40 with MS and I've seen spectacular results so don't worry, just trust me.'
But I knew more about him than most would, I knew of his previous incarnation on TV and that he is qualified as a psychiatrist. I knew he was a qualified doctor, but not in any sort of discipline around neurology.
Filming secretly for Panorama was a bit of a worry because we didn't know how carefully they were watching us, we were a bit nervous, wondering if they had cameras on us while we waited, if they were suspicious of us. But inside all we saw was naked greed - greed and a conveyor belt of people with various neurological diseases.
I saw one man with what I think was probably cerebral palsy, a lady with MS and two other women inside this large room in the beautiful Spanish style villa in a gated setting overlooking the ocean.
Those two women were sitting at a table counting out what looked like travellers' cheques. That alone was four money-taking opportunities at $30,000 each.
I doubt that the term I have for someone like Dr Rader can be printed.